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The development of the PlexiQoL: A patient‐reported outcome measure for adults with neurofibromatosis type 1‐associated plexiform neurofibromas

BACKGROUND: To develop and validate a patient‐reported outcome (PRO) measure of quality of life (QoL), specific to patients with Neurofibromatosis Type 1 (NF1)‐associated plexiform neurofibromas (pNFs), suitable for use in clinical efficacy trials. The study was conducted in parallel in the UK and U...

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Bibliografski detalji
Izdano u:Mol Genet Genomic Med
Glavni autori: Heaney, Alice, Wilburn, Jeanette, Rouse, Matthew, Langmead, Shannon, Blakeley, Jaishri O., Huson, Susan, McKenna, Stephen P.
Format: Artigo
Jezik:Inglês
Izdano: John Wiley and Sons Inc. 2020
Teme:
Online pristup:https://ncbi.nlm.nih.gov/pmc/articles/PMC7767563/
https://ncbi.nlm.nih.gov/pubmed/33085177
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1002/mgg3.1530
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